Fibromyalgia, characterized by widespread pain, difficulty sleeping, and a range of other somatic and psychological symptoms, affects an estimated 5 million adults in the United States (US), some 87.5% of whom are women.1 In addition to impacting physical and mental health, fibromyalgia also impacts sexual function.2 One recent study found significantly higher sexual dysfunction in people with fibromyalgia versus those without, in both women (86.9% vs 23.6%; relative risk [RR] 3.7, 95% confidence interval [CI], 2.4-5.6) and men (76.5% vs 6.7%; RR 11.5, 95% CI, 1.7-77.6).2

Another study assessed sexual function among women with fibromyalgia throughout the sexual response cycle, divided into the desire, excitement, plateau, orgasm, and resolution phases.3Among 63 premenopausal, heterosexual women with fibromyalgia ages 21–54, no difference was found between women with fibromyalgia and those without vis-à-vis sexual function in the excitement and orgasm phases; the women with fibromyalgia did, however, report increased difficulties with sexual desire and satisfaction, more bodily pain, and lack of sensitivity (but not pain) in their genitals before, during, or after engaging in sex.3

“Sexual functioning is a neglected area of quality of life in patients with fibromyalgia, and is not routinely addressed by physicians or health professionals, nor is it part of frequently used questionnaires to assess physical function or quality of life,” said Antonio G. Tristano, MD, MSc, FACP, of the Rheumatology Department, Centro Médico Docente La Trinidad in Caracas, Venezuela.

Matarín Jiménez and colleagues conducted a study to assess how women with fibromyalgia perceived and experienced their sexuality. For this study, the researchers used a convenience sample (a type of nonprobability sample made up of people who are easy to reach) of 13 women recruited through a fibromyalgia patients association. The participants ranged from 22 to 56 years old (average age was 44.8 years) and they had lived with the diagnosis of fibromyalgia for an average of 14.3 years.4

To gather the data, a nurse and a psychologist conducted a focus group and in-depth interviews.4 The analysis involved a qualitative assessment designed to identify themes, sub-themes, and units of meaning reflected in the participants’ responses to the focus group and interviews.4 The findings revealed three major themes: physical impact; sexuality and identity; and impact on the relationship.4

On the physical level, women expressed a “don’t touch, don’t look” attitude towards their own bodies regarding sexual relations with their partner.4 The participants identified both generalized and genital pain before, during, or after intercourse that might last hours or days and potentially lead to an aversion to sex.4 On a more psychological and emotional level, participants reported a struggle against the loss of sexuality and identity.4 They said they wanted an active sexuality, but recognized the need to deal with crisis periods during which they experience more pain and feel more depressed and disheartened, leading to a decreased desire for sexual engagement.4Finally, participants spoke about sexuality as a way of connection with their partners. As fibromyalgia symptoms take their toll, women may focus solely on fulfilling their partner’s needs to the exclusion of their own. Unfortunately, the woman’s partner may not understand her lack of interest in sex. This may lead to feelings of fear, guilt, and frustration that can undermine the relationship.4

The participants informed the researchers that sexuality was important to them, in particular to their identity and quality of life, despite the limitations imposed by fibromyalgia. While some women with fibromyalgia give up sexual activity, for most women with the condition, sexuality remains a need on physical, psychological, emotional, and relational levels. To maintain their sexual health, women with fibromyalgia need support and understanding from their partner, from healthcare professionals, and in their social and family environments.4

This study was addressed to a nursing audience. The authors argue that as part of a multidisciplinary care team, nurses have an important role to play in recognizing the issue of sexuality in women with fibromyalgia, addressing each patient’s specific symptoms and experiences and helping the patient adapt. While awareness of these issues and an intention to address them are a good start, additional research is needed to develop tools for assessing women’s sexuality as well as their processes of coping and adaptation in the setting of fibromyalgia.4

“It is imperative that physicians and nurses raise the subject of sexuality with their patients with fibromyalgia,” said Dr Tristano, adding, “All clinicians who care for women with fibromyalgia should consider whether they are addressing sexual dysfunction adequately.”